|CADBURY'S DAIRY MILK by Robert Ludlow|
18th May 2014 – my birthday and I wake up feeling not very good because not only am I going into The National Hospital of Neurology and Neurosurgery in London today for my Deep Brain Stimulation surgery but also, over the last ten days, I have had to reduce my dosage of one of my drugs to nil in order to make it less likely that I feel psychotic once I have been ‘’turned on”. I struggle downstairs and open my presents and cards. Everyone has been so kind but none more so than Jane whose birthday it was the day before. She has been amazing in the face of what has been an incredibly worrying time for her. I mean she went through it all before when I was first diagnosed, then she had to go through it again when, suddenly, I became Superman after going on the drugs. But this was different – it was a bloody brain operation.
My twin sister, Sally, came over having recently lost her husband and so she wasn’t feeling great either but I’m afraid that, by the time her two lovely children arrived, I had had it and just wanted to get going to the hospital which had telephoned quite early on to confirm that they had a bed and expected me late afternoon. We drove up and got there about six pm but I was so bad that Jane had to help swing my legs around so that I could stand up out of the car. She asked this big guy called Abraham if he could help. His wife worked at the hospital and he went in search of a wheel chair, found it, plonked me in it and then pushed me in; one of many acts of kindness shown to me over the next two weeks. I have to say, however, that apart from all this spazziness, I was in quite good spirits.
Jane took me up to Lady Anne ward guided by a nursing assistant called Jeff whom was going there himself as it happened. I never saw Jeff again during my stay there but I won’t forget him. I had already decided to give myself up to the nursing staff and just allow myself to be looked after. I was put in a side room off the ward and assumed that I would not be there all the time during my stay but in fact I was. Lucky Tim they call me.
Jane was brilliant because she said to me that evening, “Why are you doing this?” and I was able to justify my decision to her and myself. It wasn’t difficult. I said that I was doing it because, in six month’s time, I did not want to be six month’s worse than I was now. For example, I went to lunch with Jane and her sister and her friend Jo, the day before. I was fine on the way there but I stayed too long and I could hardly walk out of the restaurant at the end, let alone walk home. My main problem is “freezing” where my brain would go to the door but my feet would stay where there were as if they had forgotten how to move. Sometimes, it took me about 45 minutes (or more) to get undressed for bed. I couldn’t turn over in bed – I couldn’t sleep if I started shaking as my head hit the pillow – my whole body but especially my neck would go into spasm. If anyone knocked the door I would struggle towards it, yelling, ”I’m coming, I’m coming” only for the person to walk off before I got there. I’m not looking for sympathy by the way; I am just explaining why the decision to go ahead with DBS was a……no brainer.
That night, I slept on my back but half way through the night, I tried to get up but couldn’t. Eventually, I rang the bell and a nurse called Joanna came in and helped move my legs and my arms so that I could struggle to the loo. She was so kind and gentle. It meant everything.
Oh, angel of the night,
I did not want you
But you answered my call
In the darkest of dark blue.
You told me your name.
You moved my legs, you moved my arms
I did not call you again.
The morning sun throws shadows
Outside on the cool brick walls;
The sounds of the city awakening
Mingle with the footsteps in the halls.
No birdsong here today
Only the incessant bleeps
Perhaps I shall just lie back
And drift into a sleep
Oh, angel of the night
Pray for me in my bower;
Cometh the man into your embrace;
Cometh the hour.
It was also the first time I met Chris, the Aussie night nurse, who, over the next few days, I got to know and like a lot. We talked a bit about cricket and I mentioned that I was a member of the MCC and suggested that he might want to come to Lord’s one day as my guest. Initially, he seemed unenthusiastic but I think this was because he had been caught out before by a patient who had done him a favour and somehow that had created a difficult situation for him. During the next day, I saw Dr Hyam, Mr Zrinzo’s registrar and Joseph, the Parkinson’s nurse and the anaesthetist whose name I regret that I have forgotten. Hyam asked me to sign the consent form for the operation which referred to the various risks including “risk to life” – gulp. I told the anaesthetist about my photographic project and asked if there was anyone who could take my photograph with the cage on my head through which they would guide the electrodes. She was brilliant because, in the end, she arranged for the hospital photographic department to send someone down to do it properly. That someone happened to be Robert Ludlow who, in 2012, won the prestigious Wellcome Images Award for his photograph of the human brain during a surgical procedure for epilepsy. He is my 300th photographer.
My brother, Anthony (officially, the kindest man on the planet) came to see me later but I was very shaky indeed and pushed my self too far by showing him two of my films. I was grateful that he had come but he knew I was tired and left and I was relieved when he did because I was basically exhausted not by him but by me and my condition.
Then - 20th May 2014 – D Day or rather DBS Day. During the early morning, I listened to my iPod shuffle and almost every song reminded me of someone or something and made me quite emotional. Then Jane arrived quite early and it was so lovely to see her. I said that perhaps we should agree that I would say something to her after the operation so that she knew that my brain was all right and, after toying with several ideas including lines from plays I had done, Jane suggested “Cadbury’s Dairy Milk” and we agreed on that.
I was given a gown to put on and some paper pants and DVT socks and so I was all ready to go by the time Jane returned from her trip downstairs for a coffee. Hugo, the porter came down for me and took me to the MRI scanning room where the operating theatre was. I was placed on the bed and the anaesthetist asked me my name “Timothy Andrews” and my date of birth “18th May 1951” and then said “You have consented to have Stage one of a sub thalamic Deep Brian Stimulation” and I said “What?!?” as if I didn’t know. Well it made me laugh. At that point Jane left me and, what seemed like five minutes later, I woke up in the Recovery Room absolutely full of myself cracking what I thought were the funniest jokes and generally getting on everyone’s nerves I’m sure. Jane who had been having kittens upstairs had come down and met two nurses in the lift who had been assisting at the operation and when she asked how it had gone, she could tell from their smiles it was ok They couldn’t let her into the recovery room however because there was another guy in there who hadn’t yet woken up. I think Joseph, the Parkinson’s Nurse, was there and said that he was going up to tell Jane that I was ok and I asked him to tell her that I had said “Cadbury’s Dairy Milk”. He called Jane on her phone and when she asked how I was, he mentioned Cadbury’s and so Jane knew for sure that I had come through it with brain (and me) intact.
I met Robert when I returned to Queen Square to have the stitches removed from my chest where they had inserted the Patient Programmer and I received the photographs from him a few days later. I have to say that, although they were taken before the actual surgery began, they make for very uncomfortable viewing but actually this was the one which impressed me most. It is so peaceful and is wonderfully composed. It says so much to me about the love and care that all the people in that hospital bestow on their patients. I shall never forget them all or my time there. They are a credit to themselves, their respective professions and the NHS.
So, thank you Robert, Abraham, Jeff, Jack, Hugo, Paolo, Ludvic Zrinzo, Jon Hyam, Sammy Jo, Hazel, Moses, Ibrahim, Ade, Joanna, Julia, Joseph, Consuelo, Maris, Tim the King, Annette, Chris, Erla, Jean, Dafina, Timothy, Clare, Sheryl, Varndir, Akaysha, Catherine, Vaughan, Nyasha, Juliana, Alberto, Debbie, Sabirah, Cherito, Amy, Alice, Tola, Elvira, Purita, Michael, Hajni and Alfredo who nursed me, fed me, cleaned my room, took my pulse and blood pressure and temperature, made my bed, (in Robert's case) took my photograph and generally and genuinely cared for me and any others whose names I may have forgotten but whose love and mercy I have not.
But and it is a big BUT, I reserve the greatest praise for Jane whose love and devotion meant so much to me. People have said some very kind things about me but I could not have dealt with it in the way I did without that love and devotion. Lucky Tim - it doesn't even come close.